Tuesday, June 24, 2014

Vertex and CF

So as I am sure you all already know the results from the phase 3 Vertex trial for DDF508 has been released and were positive!!! We are hoping the FDA approves it by end of quarter 2014, come on FDA!!

There seems to be a lot of mixed feeling about these meds which I find bizarre to say the least. Many people, like me, are excited, of course! But there seems to be a very vocal group of CFers that like to point out all the negatives of this potential drug.

Ummmmm, hello!! There are new drugs coming out for CF, how in the world is that a negative thing?? Is this a cure? No way. Will it make our lives normal? Nope. Will we see an increase in our PFTs? Maybe, but no guarantee. Will we get to reduce or stop doing our treatments? Of course not! Is there the potential for negative side effects? Yes, but have you ever taken Prednisone? Most side effects > better than being killed which is what CF does best.

Regardless, we have another tool to fight this awful disease. One more chance to live a longer life. One more defense against lung infections and scarring and permanent damage. It may not work for everyone with DDF508, just like Tobi doesn't work for me, but for those it does work for it is totally worth it.

So today is a game changer! Today I am going to celebrate and be excited about the future for CF patients because we are moving in the right direction and there are other drugs following close behind. We just need to keep hanging on as long as we can so that maybe someday our life expectancy will be virtually normal and we can look back and say, "remember when CF would take so many young lives..."